Hi, my name is Gail Springer. I am 43 years old and live in Dallas, Texas. I am a single mother of three children. I have myelofibrosis. I'm not sure exactly where to start or how far to go back. I remember having some symptoms a lot farther back than when I first received my doctor's confirmation.
I remember going to the doctor when my daughter was 2 years old, (she's 13 years old now). I had such severe pain in my left side that I'd be driving a car and have to pull over and stop and wait for the pain to subside. The doctor said it was stress, hmm, was it? I actually felt a lump in my right side and told the doctor and was worried about it being some kind of cancer. He said you don't get cancer there that would form a lump. I was worried, the pain eventually stopped for a while and I quit worrying about it. It went like that for several years the pain would continue to come and go and then I started having dizzy spells and getting nauseous.
I gave birth to my last child in August, 1990 and in September I decided to have my tubes tied. I went for routine lab work and a physical exam and the doctor called that Friday afternoon and said that my blood work had come out abnormal and wanted me to come in and get it re-done on Monday morning. I went back to the lab and they drew blood. The doctor had me come into his office and he informed me that I had a very high platelet count (over 900,000). I didn't know what this meant and so I started the very long process over the next few years of going to blood specialists and liver specialists and having every test in the book done (ultrasounds, CT scans, liver biopsy, more blood work, bone marrow test, more blood work, etc.).
By the way, I never had my tubes tied; the doctor wouldn't let me until we found out what was wrong and since they never figured out what was wrong, that was that. I begin to have a lot of really bad strong pains in my abdomen area and every time I'd go to the doctor they'd notice that I had a very large spleen. They'd ask me all kinds of questions related to my spleen size but no one ever had an answer as to why. I began to inform the doctors when I'd go to the emergency room that I did have an enlarged spleen and I would like them to find out why.
There were periods of time when I would get really bad cluster headaches, they would come and go all day long so that I was practically living on tylenol. I would go to the doctor and he'd prescribe some medication. Eventually, after two or three months, they'd go away only to show up several months later. I haven't had cluster headaches now for about four years. I was with Kaiser Insurance plan, and of course, was going to Kaiser doctors.
In the meantime a lot of other things were going on. At the time we lived in Westminster, California and had our own business. The recession hit and our business began to suffer badly. It was going downhill; in March of 1993 my father died with a brain tumor that had been diagnosed in December of 1992. We lost our business and pretty well everything else, our house included. We went to Poway, California and stayed with my brother there until June, 1993 so we could stay in California till my son graduated from high school. The day of his graduation we headed for Dallas, Texas to live close to my family.
When we got to Dallas, I got a job with the City of Dallas Police Department and got insurance again (Kaiser). I started having pains again and going to the doctors again. One doctor diagnosed me with Irritable Bowel Syndrome, I had been having problems with diarrhea clear back to 1979. I remember at that time that I had a job that caused me severe stress and I started having panic/anxiety attacks. I suffered with anxiety attacks all these years and still do to a much lesser degree. I never really found a doctor who considered my anxiety attacks serious enough to help me do anything about them. I went to therapy on and off through the years a little.
One night I was hurting so bad I couldn't lay down, sit up, stand or walk or anything and after taking six tylenol in about six hours (the last two being Tylenol P.M.) I told my husband to take me to the Emergency Room. Upon getting there (you know how emergency rooms are) I waited so long on the little bed in the back (Kaiser again) that the Tyelenol P.M.'s actually took effect and by the time the doctor came in I was asleep. Well he woke me and poked and prodded and of course asked me if I knew my spleen was enlarged. But he found nothing and just told me to see my regular physician on Monday.
Over the weekend I felt a lump in my belly button (December, 1995) and when I saw my physician on Monday I reported this to him. He examined it and said it was a hernia and referred me to a surgeon. I had surgery to repair the hernia.
Then I changed doctors and insurance companies (couldn't afford the $400.00 per month I was paying for Kaiser Insurance for myself and my family through my job so I chose the cheaper insurance plan). I went to a regular physician and basically started this whole thing again. He referred me to a doctor in Mesquite, Texas with Texas Oncology (Dr. Jain). And, of course, I requested all of my medical records from previous doctors (Kaiser). I just didn't want to go through any unnecessary testing that I had previously had done. When I received my medical records from Kaiser, I read them and noticed that they had put my diagnosis of myelofibrosis in my records, but they had not told me about it. I'm not sure as to actually when they decided that I had it.
My new doctor did a bone marrow aspiration on me and diagnosed me with myelofibrosis. When I received this diagnosis, there really wasn't much information about it. I really didn't even know what it meant so I kind of enjoyed la la land for a short while. In the back of my mind I knew I had to find out more, so I kind of talked to everyone I knew, called NORD (Nat'l Organization for Rare Disorders) and got on a mailing list and started corresponding with others and one of them put me in touch with this group and I'm so glad he did. Finding support and knowledge has been the best thing to happen to me since finding out about this illness.
In the meantime I started having severe abdominal pains again and a second hernia was noticed so I went in and had surgery again. The day after I had this surgery I filed for a divorce from my husband. I decided to make some changes in my life that would allow me to live to raise my children and decided the stress had to go.
My doctor first prescribed hydrea for just a short time and then put me on Interferon. I had a full month of flu like symptoms, the nausea, the chills, fever, headaches, aches and pains, and fatigue. Then my insurance company refused to pay for the interferon so I was taken off of it. My doctor found a company that would send it to me, so after about a month off I was put back on and went through the usual flu like symptoms again. I was working a full time job and raising two young children by myself and this was very difficult to do under these conditions. I couldn't work and stay on interferon so I quit the interferon at the time and then knew I had to make a decision to quit my job. I was just dragging all the time, I felt like the walking dead. So I quit my job to stay home and take care of my kids.
I somehow developed fluid in my abdomen from the surgery to repair my hernia and I looked very pregnant and was miserable. I was on Lasix and Aldactone for the fluid build up and have now dealt with this for over a year. I went into the hospital for seven days in July, 1996 and was given a lot of diuretics and lost 21 pounds, so right now we are monitoring my weight very closely. So far so good, I have kept it off and not gained back one pound. I also am on a very low sodium diet.
My blood work is great when I visit my doctor. I go in about every month at this time. I still have a lot of aches and pains around my back, my arms get very sore, and I still get really tired. I had to learn my limits and try to live within them. I start hurting if I walk for too long a period of time or stand for too long. I now have a third hernia that is up higher between my chest cavity and one again in my belly button area that we just discovered in July, 1996. The doctors do not want me to have any kind of surgery due to my fluid problem, they feel It would be too risky. I would love to have my spleen taken out and feel it would help tremendously, but I'm not willing to take any risks with my life. I still have a lot to do here and know a lot of people have been known to live for years with this disease. I have to live because I still have children to raise.